scholarly journals Googling for neurological disorders: from seeking health-related information to patient empowerment, advocacy and open self-disclosure in the Neurology 2.0 era (Preprint)

Author(s):  
Mariano Martini ◽  
Nicola Bragazzi
2019 ◽  
Author(s):  
Mariano Martini ◽  
Nicola Bragazzi

UNSTRUCTURED The Internet, since its introduction, has played a major role in re-shaping the patient-physician communication and interaction, fostering a shift from a paternalistic to a patient-centered model. Because of its dynamic nature, the Internet has been used a platform not only for disseminating knowledge, facilitated by an improved access to an increasing figure of available resources, but also to spread advocacy, awareness, funding raising and even to openly self-disclosure one's own disease, breaking and removing any taboo. The era of Medicine 2.0, as stated by Eysenbach, is characterized by openness, collaboration, participation and social networking. The situation is completely different with respect to time when Odone's parents, after the diagnosis of adrenoleucodystrophy of their son, decided to attend the medical school in order to collect information about a devastating, unheard disease and had to fight against the medical establishment to convince of the effectiveness of their discovered therapeutics. Orphan and rare neurological diseases find nowadays their space and dignity online. However, not to dissipate Odone's family legacy and their “complicated lessons” (Lerner), some issues should be carefully addressed by health authorities, such as the reputability, reliability and accuracy of the online available material, avoiding to spread material that could instill in patients illusions and unjustified hopes. Neurologists should be aware of this, participating in online activities, and recommending high quality, selected sites to their patients.


1968 ◽  
Vol 23 (3_suppl) ◽  
pp. 1239-1248 ◽  
Author(s):  
Robert E. Kleck

Self-revelation patterns of epileptics who had their seizures under drug control were examined with questionnaire and interview procedures. Parents were found to be the clearly preferred targets for self-disclosure generally and for health-related information in particular. As expected, all respondents chose not to reveal their stigmatized condition to at least some persons significant to their life space, although as a group they varied in their openness to others. Negative attitudes on the part of parents toward epilepsy and toward revelation of the condition outside the family were seen to encourage a sense of secretiveness and social withdrawal.


2013 ◽  
Vol 23 (3) ◽  
pp. 82-87 ◽  
Author(s):  
Eva van Leer

Mobile tools are increasingly available to help individuals monitor their progress toward health behavior goals. Commonly known commercial products for health and fitness self-monitoring include wearable devices such as the Fitbit© and Nike + Pedometer© that work independently or in conjunction with mobile platforms (e.g., smartphones, media players) as well as web-based interfaces. These tools track and graph exercise behavior, provide motivational messages, offer health-related information, and allow users to share their accomplishments via social media. Approximately 2 million software programs or “apps” have been designed for mobile platforms (Pure Oxygen Mobile, 2013), many of which are health-related. The development of mobile health devices and applications is advancing so quickly that the Food and Drug Administration issued a Guidance statement with the purpose of defining mobile medical applications and describing a tailored approach to their regulation.


2020 ◽  
Author(s):  
Victoria Kordovski ◽  
Savanna M. Tierney ◽  
Samina Rahman ◽  
Luis D. Medina ◽  
Michelle A. Babicz ◽  
...  

Objective: Searching the Internet for health-related information is a complex and dynamic goal-oriented process that places demands on executive functions, which are higher-order cognitive abilities that are known to deteriorate with older age. This study aimed to examine the effects of older age on electronic health (eHealth) search behavior, and to determine whether executive functions played a mediating role in that regard. Method: Fifty younger adults (≤ 35 years) and 41 older adults (≥50 years) completed naturalistic eHealth search tasks involving fact-finding (Fact Search) and symptom diagnosis (Symptom Search), a neurocognitive battery, and a series of questionnaires. Results: Multiple regression models with relevant covariates revealed that older adults were slower and less accurate than younger adults on the eHealth Fact Search task, but not on the eHealth Symptom Search task. Nevertheless, executive functions mediated the relationship between older age and eHealth Fact Search and Symptom Search accuracy. Conclusions: Older adults can experience difficulty searching the Internet for some health-related information, which is at least partly attributable to executive dysfunction. Future studies are needed to determine the benefits of training in the organizational and strategic aspects of Internet search for older adults and whether these findings are applicable to clinical populations with executive dysfunction.


Author(s):  
Adèle Perrin ◽  
Luiza Siqueira do Prado ◽  
Amélie Duché ◽  
Anne-Marie Schott ◽  
Alexandra L. Dima ◽  
...  

Person-centered care has led healthcare professionals (HCPs) to be more attentive to patients’ ability to understand and apply health-related information, especially those with chronic conditions. The concept of health literacy (HL) is essential in understanding patients’ needs in routine care, but its measurement is still controversial, and few tools are validated in French. We therefore considered the brief health literacy screen (BHLS) for assessing patient-reported HL in chronic care settings, and also developed an HCP-reported version of the BHLS with the aim of using it as a research instrument to assess HCPs’ evaluation of patients’ HL levels. We assessed the content validity of the French translation of both the patient-reported and HCP-reported BHLS in chronic care within hospital settings, through cognitive interviews with patients and HCPs. We performed qualitative analysis on interview data using the survey response Tourangeau model. Our results show that the BHLS is easy and quick to administer, but some terms need to be adapted to the French chronic care settings. Health-related information was observed to be mainly communicated orally, hence a useful direction for future literacy measures would be to also address verbal HL.


Author(s):  
Elke Knisel ◽  
Helge Rupprich ◽  
Annika Wunram ◽  
Markus Bremer ◽  
Christiane Desaive

Health literacy is an important outcome of the discussion of school-related health education and health promotion in the 21st century. Although the improvement of health literacy at an early age is increasingly recognized and few interventions show the development of children´s health literacy, still there is little research in this area. The purpose of the study was to examine the enhancement of health literacy among children in a physical activity-based program at elementary school. In total, 137 students aged 6–12 years participated in the program, which included health knowledge transfer in child-appropriate games and exercises. Participants´ health literacy was assessed using the HLS-Child-Q15-DE at the beginning and the end of the program. The instrument measures the access, understanding, appraisal and application of health-related information on a four-point Likert-type scale. As expected, the Wilcoxon signed-rank test revealed significant increases in self-reported health literacy over time. The results show that the degree of change in health literacy was not associated with gender or age. The results suggest that the physical activity-based program has the potential to improve elementary school children´s health literacy, even though in a single group pilot study.


1987 ◽  
Vol 60 (3_part_2) ◽  
pp. 1151-1156
Author(s):  
John M. Davis ◽  
R. Wade Wheeler ◽  
Eve Willy

From a large class who had been pretested on the I-E Locus of Control Scale and a self-esteem measure, 30 overweight and 20 normal-weight students were selected and measured to determine their percentage of overweight. They were then asked to complete questionnaires measuring knowledge of health-related information and of specific obesity-related information. Results confirmed (a) a negative correlation between self-esteem and percentage overweight and (b) less knowledge of broad, health-related information among obese students. No relation was found between percentage of overweight and I-E scale scores.


2019 ◽  
Vol 31 (2) ◽  
pp. 890-909 ◽  
Author(s):  
Yuxia Ouyang ◽  
Amit Sharma

PurposeThe purpose of this study was to investigate the preference of health-warning message labeling in an eating-away-from-home context. The authors assessed individuals’ preference valuation of such messaging from a dual – consumer and citizen – perspective and with associated expected risk reduction (RR) level.Design/methodology/approachIn an online stated choice experiment on Amazon’s Mechanical Turk (N = 658), participants were asked to provide willingness to pay (WTP) preferences for health-warning messages and based on the expected RR from health-warning messages. Two types of multiple price list questions were used for consumer and citizen contexts. Interval regression and descriptive analysis methods were applied to analyze the data.FindingsThe study found that individuals placed a higher value (higher WTP) on health-warning message labeling when acting as citizens rather than as consumers. An RR expectation of 50 per cent was most effective in increasing participants’ WTP. Individuals who ate out frequently were more concerned about healthier food messages, and the influence of gender and age on WTP was conditional on individuals’ roles as consumers versus citizens.Originality/valueThis study extends the theory of consumer-citizen duality to the context of health-related information labeling, thus opening the discussion to extending such labeling from traditionally risky behavior such as alcohol and tobacco to also including food choice behavior. The authors also highlight implications on policy and industry practices to promote healthy food choices through such messages.


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